Grateful parents in 150km Christmas charity challenge to say thank you for son’s care

Clare and Tom Law are taking part in the National Elf Service, a festive fundraiser when charity supporters don their festive jumpers, dress up as elves and take on challenges to raise much-needed funds for Sheffield Children’s.

They were inspired to take part after their six-year-old son was cared for at Sheffield Children’s. Austin was diagnosed with a rare genetic disorder called cystinuria in July 2018.

Cystine is an amino acid that make up proteins in the body. While most people’s kidneys break down these amino acids and reabsorb them into the body, people with cystinuria are unable to do this. As a result, cystine builds up which causes crystals to form and eventually turn into kidney stones.

A stone can appear for the first time at any age, but most people with cystinuria get stones in their twenties and thirties. Austin was just four when he was diagnosed, after a stone almost filled the entire kidney.

Mum Clare recalls: “He had a bout of illness. We knew he had kidney stones following scans at our local hospital in Blackpool but had no idea why and had never heard of this condition.

“It was a mixture of emotions. We were glad that they had found why he was poorly regularly as we knew something wasn’t quite right. But as the condition is so rare in children, there wasn’t lots of information out there. We weren’t sure about the treatment he would need and if he would make a full recovery. That’s when we were referred to Sheffield Children’s.”

In May 2019, Austin had major surgery to remove the stone, which lasted approximately five hours. He then stayed on a ward at Sheffield Children’s for a week in recovery. The damage from the stone has limited his kidney function to 20%, although it is hoped this will improve as he grows.

Mum Clare explains: “Professor Godbole was the most amazing and kind man, we couldn’t have asked for Austin to be in better hands. We understand it is an incredibly difficult operation because of Austin’s size and the close proximity of his kidney to all his other organs.

“Doing this kind of surgery at his age takes incredible expertise and we were so fortunate to have the team at Sheffield Children’s.”

Austin now needs to take medication twice a day and to drink between 2-3 litres of water to prevent more stones forming and doing further damage to his kidneys.

Dad Tom adds: “He’s an absolute trooper who rarely complains despite his ongoing discomfort. He has also become very good at hiding his drinks!

“Unfortunately, there is no cure and he will always need to drink large amounts of water, even more so when he’s older. We’ve been told to expect more surgery in the future, but at the moment things are really good and he’s monitored and scanned regularly."

To say thank you, Austin’s mum and dad are running 150km between them from the 1st-24th December for The Children’s Hospital Charity’s National Elf Service fundraising campaign.

Mum Clare continues: “We’ve been meaning to fundraise for The Children’s Hospital Charity for quite a while to be honest, but this year has made us really thankful for how lucky we’ve been with the care at Sheffield Children’s.

“We know that with so many fundraising events being cancelled for the Charity, it’s been a very challenging time for them, so we wanted to help in any way we could. Neither of us are regular runners so it’s a big deal for us!

“We are sharing it out between us, running just over 6km a day to make sure we don’t have to run a marathon on Christmas Eve! The first few runs have thankfully gone well.”

“We know how difficult things are for people at the moment, so we originally set our target at £150. However our friends, family, colleagues and the local community have been incredible and donations are flying in!”

“Everyone on the ward was just brilliant and we really couldn’t have asked for anything more! Sometimes it’s the little things that make the biggest difference and the care and kindness that Austin was shown made the whole experience so much easier for us.”

“If we could get to £1,000 we’d really feel like we’ve been able to say a proper thank you to all the incredible staff that supported us and also recognise the cutting edge, often charity-funded, facilities that Sheffield Children’s has.”

Professor Prasad P. Godbole, Consultant Paediatric Urologist and Deputy Medical Director at Sheffield Children’s added: “I would like to thank Austin’s parents for the great charity work they are doing for The Children’s Hospital Charity- running certainly isn’t one of my greatest attributes!

“Austin was a very good patient when he came in for his surgery and I continue to wish him and his family well.”

To join them in fundraising for Sheffield Children’s this Christmas, visit www.tchc.org.uk

In these confusing and worrying times, local journalism is more vital than ever. Thanks to everyone who helps us ask the questions that matter by taking out a digital subscription or buying a paper. We stand together. Nancy Fielder, editor.